A Severely Ill Child In The Family

Your child has been diagnosed with a serious illness – this is a scenario every parent dreads.

It could be a disease that slowly gets worse over time. It could be a condition that is curable or incurable. Or it could be an illness that varies, leaving your child desperately unwell one week and seemingly themselves the next. When there is a very sick child in the family, everyone has powerful emotions to deal with.

Here are some things to think about:

The parent(s)

For the parent, it is impossible to cope with everything single-handedly. Use any support you can, and don’t feel bad about using and asking for help. If you don’t have family nearby (a common situation for many expats), try to build support from friends, from patient support groups, and from the health professionals involved in your child’s care. Your child’s paediatrician should be able to advise on local groups or may even know other English-speaking parents in a similar situation who are happy to be in contact. As well as providing information, online support forums can be a very useful outlet for your emotions (anger, guilt, and helplessness are all common feelings). Remember too that you need to eat, sleep, and look after your mental health, and seek advice from your own doctor and see a counsellor if needed. You may find keeping a diary helpful. This doesn’t need to be lengthy written-down entries. A good way to track how you are feeling is by writing a daily short sentence or phrase, and keeping these as a message in the “Drafts” folder of your email account.

The siblings

The age(s) of any siblings will have a bearing on how they feel emotionally, how they express their emotions, and how much or little they are able to understand. They may feel guilty or responsible for the child who is sick. They may have difficult questions about death. They may retreat and not want to burden or bother you. They may rebel at school.

Always try to keep the needs of your other children in mind. Allow them time to talk, question, and voice their feelings, even if these are “negative” feelings. It will be very hard to find time when you are stressed and exhausted, but it is essential.

Siblings will vary in how much involvement they want. Some may wish to come along for hospital appointments and check-ups and learn all about the condition. Others may feel unnerved and upset about having their schedules and lives messed up. Perhaps get siblings involved by having them choose books and DVDs, special music or iPad games that the child who is sick might enjoy.

The issue of discipline is a difficult one. It may be tempting to overlook situations where the child who is ill is “in the wrong” (e.g., lying). And however much you want the well sibling to be nice to the sick sibling, this is not realistic. As a family it is probably better to emphasise that you want everyone to be as normal as possible (whatever “normal” is in your family!), even if that means frequent sibling spats.

Your paediatrician may know of sibling counselling or support groups that can help.

Other relatives such as grandparents, uncles, and aunts

If you are lucky enough to have relatives living nearby who are willing to get involved, then please take them up on their offers of help. They can lend a hand ensuring your other children reach school on time, get to clubs, activities, and birthday parties, or provide adult supervision when needed. They can also spend time with the child who is sick, so you can have one-to-one time with your other children.

You need strategies for dealing with family members who either live far away or are not emotionally close to you. You don’t want relatives phoning for updates at inconvenient times, and you are unlikely to have the energy to phone up each person individually to share what is happening. So it is worth choosing someone to do this job for you – is there a particular family member who can be the designated messenger for all news about your child? This person can manage all the family phone calls. Some of your family may huff at not having direct access to you, but you have enough emotional turmoil to deal with as it is.

Alternately, you could set up an email group including all your family members and send a short email update regularly.

The workplace

Your employer should give you up to three days to take care of a sick child. If you have a seriously ill child and are likely to need a lot more time off, you should be able to request this (the outcome of your request is dependent on employer discretion, and you’re likely to be paid for a limited time period only).

The Swiss Red Cross childcare service

If you are stuck in an unexpected situation and are struggling to find family or friends to help you immediately, there is a childcare service offered by the Swiss Red Cross. This provides a temporary solution if you have nobody available to care for your child. The service is locally based. For more details about childcare at home, see Kinderbetreuung zu Hause (in German) or Garde d’enfants à domicile (in French) at the Swiss Red Cross website.

Your experiences

Do you have a child with a severe illness in your family? How do different members of the family cope? Can you recommend a useful family support resource in Switzerland?

This is a sensitive topic, and we are grateful for your tips and comments.

By Dr. Jahura Hossain

Born and brought up in London, Jahura is a U.K.-qualified doctor. She has worked in hospitals, general practice, public health, prison medicine, and the pharmaceutical industry.

Illustration by Laura Munteanu

Laura has studied Journalism and Advertising, and has been working as a journalist and an illustrator. She has been illustrating for magazines, websites, charity and diverse campaigns. She lives in Zurich with her husband and six-year-old daughter.

© Copyright. Jahura Hossain. 2015. All rights reserved. No part of this article may be reproduced without the express consent of the author.